Thousands of disabled babies are living longer than ever before, says Sarah Barclay. Why don't we pay for them

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When Emmy Myerson was born in June 1991, everyone celebrated. Those ‘weird, regular kicks’, which began when her mother was seven months pregnant, had been brushed off as ‘perfectly normal’ by the doctors. Even if they had been investigated, there probably wasn’t much anyone could have done for the Myerson family.

When Emmy was three months old, she had her first fit. The fits continued, with increasing severity. She spent nine months in hospital, wired up and subjected to every test and medical student in sight.

They still don’t know what’s wrong with Emmy, but one afternoon, in a tiny cubicle in Great Ormond Street Hospital, with no preamble, her parents were told that she would be profoundly brain-damaged and physically disabled for the rest of her life -which wasn’t expected to be long. They took her home. It was where they thought she should be, even though some people advised them to put her into care and wished them better luck next time. That was 11 years ago.

Emmy cannot walk or talk, she has extensive brain damage and severe epilepsy which cannot be controlled by drugs. Everything she eats must be purZed and she frequently needs suctioning to remove mucus from her throat. She is doubly incontinent. She can see and hear, though, and her smile can light up a room. Twenty years ago, like thousands of other children, Emmy would almost certainly have died.

Many more children like her are not only surviving but also living much longer – often into their teens and beyond; a success which owes much to the quality of neonatal care and medical technology, especially ventilation and tube-feeding. A generation ago, it would have been unthinkable for pre-term babies of fewer than 23 weeks to survive. Now the term given to such heroics – ‘salvaging’ – says much about the potential risks involved. About a quarter of babies born at 25 weeks’ gestation have disabilities described as severe. The tough question is this: if doctors try so hard to help sick babies to survive, what support should their parents be offered when they take them home?

It is estimated that there are at least 100,000 children in Britain today with severe disabilities. When I tried to find a more accurate figure, I discovered that no one has attempted to discover the prevalence of severe disability in children since 1989. It is simply accepted that the number of such children has been growing for some years and will continue to grow. Most now live at home, and many of their parents are being denied basic help in the home, let alone access to specialist overnight respite care.

When I first met the Myersons last September, there were, according to their GP, ‘significant concerns’ about their ability to cope. ‘They have reached breaking point,’ he said. Until that point, everyone thought that they’d been coping very well. This only goes to show, according to Emmy’s mother Tussie, how adept she had been at concealing what was going on behind the scenes.

The irony of their story is that this couple, who were merely asking for regular and reliable help but who were being offered what has often been an unreliable and frequently changing service, are now asking Oxfordshire County Council for one of the most expensive options of all – a place in a local residential school for severely disabled children costing £135,000 a year.

‘You reach a point where you physically cannot care for her, when you physically haven’t got the ability to get up for the 20th time when it’s five o’clock in the morning and you haven’t slept, and you start wondering whether you are actually able to give her the care she needs,’ said Emmy’s father, David. ‘We are broken, exhausted.’

To date there have been three high-level meetings of senior health, social-services and education managers to discuss Emmy’s case. They have said no twice but are still reviewing the position. The council’s case, not an unreasonable one given the financial constraints, is that if they pay for a child such as Emmy to go to residential school, it will mean less help for other children who need cheaper packages of care. This is a council, like so many others, which has significantly overspent the money it has been given by central government to spend on services for children. In Oxfordshire they’ve had to make cuts of £9 million in the social-services budget for the current financial year.

Given the huge financial constraints facing social-services departments everywhere, increased demand often results in what is now a phenomenon called ‘Unmet Need’. It’s another word for rationing. It can mean two things: either that you are a person who has a need that has been officially assessed but which cannot be met because of lack of money or staff, or that you are a person whose needs are deemed to be below the qualifying threshold for getting help.

In Oxfordshire the council has recently admitted the extent of its unmet needs for disabled children. A report published last month said, ‘All of the services for disabled children are under pressure because of high demand. Most employ some form of eligibility criteria in order to ration the available resources so as to ensure that they can be accessed by children in the greatest need.’

However, it then revealed that even some of the children in greatest need could not be helped either, because of lack of facilities, staff or money. A ‘significant minority’ of the requests for help which were turned down by Oxfordshire Social Services Priority Panel included ‘children who needed large packages of overnight respite care because of sleep disturbance and extremely challenging behaviour’.

‘The level of demand for specialist, expensive services is so high that the threshold for eligibility for service is also very high,’ the report said. ‘Many families say they are deterred from applying for services by being told they will not be eligible.’

The Myersons are a middle-class couple living in rural Oxfordshire. They are not wealthy. However, they are both articulate and determined, and they waited many years before they turned to the state for help because they believed it was their duty to cope. Friends have raised money for adaptations to the house and for a lift which allows Emmy to go upstairs in her wheelchair.

‘It’s the loneliest journey imaginable,’ said Tussie. ‘I wouldn’t wish a child with profound disability on my worst enemy. I couldn’t imagine life without Emmy, but nothing can prepare you for how much you have to fight. We’re not the only family to have a child with multiple disability, but there is no structure to support that family. Periodically you do think it would be so much easier if she died.’

These are not the words of a mother with murder in mind. They are the words of a mother who has been worn down by arguments and assessments, and who wonders why, if doctors can do so much to help children like Emmy survive, the state seems not to consider them a priority when they start to grow up.

Sarah Barclay is a reporter for Panorama. ‘Survivors’ will be broadcast at 10.15 p.m. on Sunday, 26 January.